Low level complement activity

[debbie thelwell]

My son is having reoccurring issues with his stomach sometimes with a puffy face.last week his vision went blurry he had a puffy face then was off school with stomach ache and feeling sick for 2days. His face is still puffy and he's complaining it hurts. Should I be concerned, I'm not sure if this is low level activity or not .has anyone else had similar issues

[debbie thelwell]

Josh at present is ok thanks i have found a leaflet on Alexions website to take to your appointments with a symptom checker and it has a puffy face on as well as other symptoms he's been having. I'm just hoping he doesn't get the sickness bug that I have, fingers crossed !!

[debbie thelwell]

Thank you for your advice, he seems ok today, Im going to email his consultant for advice we have an appointment on the 4th of March.  I will print out all the info and request testing. It's strange you think your coping and you coast along and then these blips happen and you realise that acually your not coping as well as you thought. Thanks again for the support :)

[Cheryl Biermann]

Debbie,

Okay, I apologise ahead of time for the spelling errors, this key board, ugh!

the only way to make sue is with labs, if the normal renal panel isn't showing anything, ask for a compliment workup.  You know, c3, ect...  because he is in pain I'd insist his doctors see him too.  If all the labs looke okay, I'd ask for an ear, nose and throat specialist to check for allergies and ask for pictures of his tummy by x ray, I forget what those are called.  I'd have them check his bowls too.  You are in my prayers, keep us posted.  Linda gave you a great source for information, if you are able, print it out and take it to your visit.

[Kimberly Tressler]

My daughter is going through this right now.  Dr. is trying to figure out what is causing it.  She had strep about three weeks ago and which caused HUS activity and labs were not good but after Soliris labs are much better and today before her Soliris treatment she had excellent labs. However, she has had headaches, stomach pain, neck pain every day for last three weeks.  Can't figure out cause yet but working on it.  I'd contact your doctor just to be safe.

 

[Linda Burke]

While your son's physician is the best source to gauge his health status and what might be related to aHUS, you may wish to check the Forum discussion on multi-organ involvement. According to www.ahussource.com , a website provided by Alexion Pharmaceuticals (makers of Soliris, or eculizumab), you'll find "aHUS Clinical Complications" which notes among its information that  48% of aHUS patients experience neurological symptoms, 43% of aHUS patients experience problems with their cardiovascular systems, and about 30% of patients experience complications associated with the digestive system such as an inflamed colon, abdominal pain, or other issues involving the digestive tract.  This information is accompanied by solid citations from specific research studies and also from articles in medical journals by noted aHUS clinicians and investigators. (Source: http://ahussource.com/hcp/clinical-complications.  References cited: http://ahussource.com:80/references )

 

Patients with atypical HUS may experience damage throughout the body, not just the kidneys, with possible damage to such vital organs as the heart, bowel, or brain.  A visual representation that kidney issues are just 'the tip of the iceberg' regarding multi-organ involvement is noted by by a graphic at http://ahussource.com/hcp/clinical-symptoms.  Visitors of www.ahussource.com are encouraged to view the compilation of sources cited by Alexion as they note, " ....see the references used in outlining early symptoms, please view our reference list. " where they've made available in a comprehensive list of international references specific to aHUS research.  FMI check the forum at http://atypicalhus.ning.com/forum/topics/ahus-complications-potential-impact-for-multiple-organs and please consider checking with Dr. Goodship and the aHUSUK families for UK info as well.

 

As always, it's best to check with medical personnel for information and advice, and you're encouraged to explore the topic of multi-organ involvement and aHUS complications to give you a firmer foundation for discussions with your son and his care team.  Best wishes to you and your son - please keep us posted.